Global Myositis Patient Organizations
Global Myositis Patient Organizations
The aims of iMyoS are to raise international awareness and to work closely with all existing national and international myositis networks. iMyoS invites all global myositis patient groups to join this community on this website as well and to save brief information on each group/organization. The mission of the groups is to offer support to patients with myositis and their families, to share knowledge about their disease, to meet others with the same diagnosis, to share experiences or just to have fun.
Czech Myositis Working Group (CMWG)
The Czech Myositis Working Group (CMWG) is a relatively young patient group, which was established in 2020 and operates under the umbrella of the Czech League Against Rheumatism. The Czech patient support group represents the interests of those affected with myositis and their relatives.
Czech League Against Rheumatism (CLAR)
The Czech League Against Rheumatism (CLAR) is voluntary, open, independent, non-political Czech association, and operates 30 years throughout the territory of the Czech Republic. It associates, educates and supports patients with rheumatic diseases, cooperates with doctors, health professionals and other partners.
The Diagnosegruppe Myositis (German patient support group for myositis) was established in 2012 as “Aktion Myositis” and joined 2014 the German Society for Neuromuscular Diseases (Deutsche Gesellschaft für Muskelkranke – DGM). The German patient support group represents the interests of those affected with myositis and their relatives. The activities of the group are planned and implemented by nine myositis-patients, two relatives and one myositis specialist as medical advisor.
Deutsche Gesellschaft für Muskelkranke (DGM)
The Deutsche Gesellschaft für Muskelkranke – DGM (German Society for Neuromuscular Diseases) is the largest and oldest German self-help organization for people with neuromuscular diseases and has almost 10.000 members. The association was founded in 1965 on the initiative of a mother of a ten-year-old child with Duchenne muscular dystrophy. Since then, the DGM has been promoting research into the various muscle diseases, some of which are very rare. Another important task of the DGM is to advise and support affected persons and their relatives in their everyday lives.
Swedish Myositis Working Group (Riksförening för myositsjukdomar)
The Swedish Myositis Working Group (Riksförening för myositsjukdomar) was established in 2020 under the umbrella organization, the Swedish Rheumatism Association, by a group of patients including two patient research partners. Our board consists of six patients, and we have a medical advisory board of two myositis experts. Our mission is to give support to myositis patients and their families, inform and raise awareness for the disease.
Swedish Rheumatism Association (Reumatikerförbundet)
The Swedish Rheumatism Association (Reumatikerförbundet) covers all the rheumatic and autoimmune systemic diseases, the number of members is 40.000. The Research goals are: Reducing morbidity from rheumatic diseases, improving quality of life for people living with rheumatic diseases, Preventing rheumatic diseases.
Dutch Myositis Working Group (DMWG)
Dutch Myositis Working Group (DMWG) operates under the umbrella of Spierziekten Nederland. It was founded in 1982 and is run by 7 members, all patients representing several types of myositis. They are supported by staff of SN and 4 medical advisors with expert knowledge on myositis.
Spierziekten Nederland (Dutch Patient association for neuromuscular diseases)
Spierziekten Nederland or SN (Dutch Patient association for neuromuscular diseases), established in 1967, is the largest patient association for patients with NMDs in the country. SN aims to improve quality of care, to increase research, to educate and inform both patients and health care professionals and to advocate for and support patients and their families and carers. Spierziekten Nederland has 9.000 members and is financially supported by Prinses Beatrix Muscle Fund and Spieren voor Spieren.
Myositis UK is a registered charity supporting those affected by Myositis. It was formed in 1985 as a contact group for parents and guardians of children with Juvenile Dermatomyositis. By 1987 it evolved to include adults with Myositis. Although a small charity providing information on Myositis one of the main aims is to raise funding to enable them to fund research to improve diagnosis and treatments. Myositis UK has also been delighted to be sponsors of three of the GCOM meetings.
Myositis Support and Understanding Association (MSU)
Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer, USA-based nonprofit organization empowering the Myositis Community through education, support, awareness, advocacy, access to research, and need-based financial assistance. MSU was founded in 2015 by Jerry Williams who fought for over 3 years for a true diagnosis of Myositis. MSU was created after identifying an unmet need for patient-centered programs and services and support for those living with Inflammatory myopathies. Our mission is to improve the lives of and empower those fighting myositis through education, support, awareness, advocacy, and access to research.